A few months ago Mookie, our beloved cat, was diagnosed with renal failure. Our choice was to let her die or, in effect, provide dialysis by injecting her with fluids every day for the rest of her life. Though giving the shots was no fun, we felt lucky to be with Mookie as she gradually faded until one day she seemed ready to let go. Our vet confirmed that Mookie was in pain and would die soon under any circumstances, so we decided to stop the injections. Mookie died peacefully the next morning.
It’s become a cliche to observe that we should be so lucky as our pets — that we escort our animals out of this life with greater compassion than our fellow humans. But the old way of dying may be dying.
Dr. Lewis M. Cohen — a Massachusetts-based physician who treats patients with kidney failure — specializes in palliative medicine, defined by the World Health Organization as “the active total care of patients whose disease is not responsive to curative treatment.” His compelling and eye-opening new book No Good Deed (Harper, $25.99) explores complex end-of-life issues with clarity and, despite his own strong opinions, an openness to disparate points of view.
Most readers will be shocked to learn that some two million Americans die each year following what Cohen calls a “structured decision to limit life-sustaining treatment.” Because technology keeps offering opportunities for people to survive longer, most of us will one day have to decide if and when excruciating suffering is worth prolonging a life that would soon end anyway.
Cohen illustrates the hazards of practicing palliative care — often incorrectly conflated with Dutch-style euthanasia and Kevorkian-like doctor-assisted suicide — via harrowing true stories as gripping as a Robin Cook novel. The centerpiece is the tale of Amy and Kim, two veteran, respected nurses whose common-sense efforts to ameliorate a dying woman’s suffering are rewarded by an accusation of murder by Olga (name changed), a devoutly religious nursing assistant. Kafkaesque police tactics, personal betrayals, prolonged investigations and psychological traumas ensue.
No Good Deed interweaves this and other page-turnable tales with explication and analysis of the conflicts roiling around palliative care. Though Cohen’s position is clear — he favors palliative care and opposes criminal prosecution of practitioners like Amy and Kim — he lays out the opposing view with empathy and without judgment.
There are millions of Americans like Olga — whose own life was turned upside-down by her attempt at whistle-blowing — who don’t view overwhelming suffering as a worst case scenario, but see iniquity in actions that take death out of God’s hands. Cohen hears out Bobby Schindler Jr., Terri Schiavo’s brother, who represents a “sanctity of life coalition” of conservative politicians and religious groups — and some disability rights activists — who believe Schiavo was murdered five years ago. To them, only God can make life-or-death decisions, and palliative care should be criminalized. (Schiavo, who had existed in a vegetative state for 15 years, had her life support terminated by court order after five lawsuits and fourteen appeals.)
Then there are those, Cohen himself passionately among them, who don’t see death as an evil to be avoided at all costs. They believe each individual has the autonomy to make reasonable end-of-life decisions, and that prosecuting doctors and nurses for anything short of criminal malfeasance is a travesty that will only ruin innocent lives and increase patient suffering.
Going after compassionate professionals like Amy and Kim wastes law enforcement resources that could be spent tracking down the real killers among doctors or nurses, whose profession gives them cover to get away with murder for years or decades. Cohen walks the reader through several hair-raising examples, including that of Dr. Harold Shipman, who during the latter part of the 20th century murdered at least 215 patients, mostly elderly women.
But those are the exceptions. The greater danger may be that even unsuccessful prosecutions of good-faith palliative caregivers like Amy and Kim — combined with real or perceived threats from extremist right-to-lifers — creates a chilling effect causing doctors and nurses to vastly under-treat pain.
As medical technology and practices continue to improve, it becomes more and more absurd to insist that everyone suffering the end stages of terminal diseases must be kept alive regardless of their wishes. Even leaving aside what Bobby Schindler calls “the whole autonomy thing,” such a system would collapse under its own weight. Before long we’d have millions of centenarians hooked up to ventilators for years at a cost so astronomical we’d have to wrap our brains around the term “quadrillions.”
Cohen’s calm, catholic approach to the debate over how we die doesn’t extend to liars. He not only takes on Sarah Palin’s grotesque characterization of counseling in this area as “death panels;” he argues that gravely ill people are generally grateful for just such an opportunity.
In the last chapter, Cohen revisits Amy, Kim and Olga, who have more or less come to terms with — but are forever scarred by — their experiences. Amy, good caregiver to the last, tries to reconcile her point of view with Olga’s, saying, “Whatever you believe is fine, if you are comfortable with it.” Good try, but here you can’t simply agree to disagree, because what Olga believes — that Amy should rot in jail – isn’t fine. As long as the irresistible force of good faith palliative care comes up against the immovable object of uncompromising “right to life,” no one will be satisfied.
In a sense, this debate is tougher even than the impasse over abortion rights. Relatively few women have abortions, but everyone dies. And virtually no woman wants to have an abortion, but most people do want, and demand, the autonomy to make informed end-of-life decisions.
With the implementation of health-care reform, the fifth anniversary of Terri Schiavo’s death and the forthcoming release of the HBO movie You Don’t Know Jack, starring Al Pacino as Dr. Jack Kevorkian, the issues raised by Dr. Cohen in No Good Deed are more front and center than ever.
So the battle will go on, enhanced by this wise, open-hearted book.
Michael Sigman is a writer/ editor, media consultant and the president of Major Songs, a music publishing company.
Crossposted from Huffington Post with the author’s permission.